I will be 30 years of age this year.
At 30 years of age my sister Jess was diagnosed with triple negative breast cancer and undertook a round of IVF, a lumpectomy, 6 months of aggressive chemotherapy, a double mastectomy and breast reconstruction.
At 30 years of age my grandmother Lise was also undergoing less sophisticated breast cancer treatment and tragically passed away at the age of 34 leaving two small boys – my dad and my uncle.
Jess and I were in our early teens when we found out that Lise had passed away from an aggressive form of breast cancer at the age of 34, but it was in our 20’s that we began to wonder what it really meant for us.
After Angelina Jolie went public about her choice to undertake a preventative double mastectomy I did some of my own research. I found the Pink Hope website and utilised their risk assessment tool. A genetic counsellor contacted me and we discussed BRCA testing and she recommended I speak to my GP. I spoke to my GP and I remember her saying- “if you find out you have the gene mutation, what areyou going to change? Why would you want to live a life of worry?”. I soon came to my senses and realized this was some new Hollywood craze, like calling your child Apple or wearing your placenta as a necklace.
It was a few years later when my uncle, who is a physician, started working with a genetic professor that the dialogue began about whether we should all get genetic testing. Not only did my father and my uncle test positive for BRCA 2, but my uncles two daughters and my sister and I also shared the same fate.
After information overload, six monthly check ups didn’t seem so bad. Besides, this wasn’t going to affect us, if at all until we were at least 60. At least that’s what the graphs in all the flyers showed. Jess and I locked in a testing “date” every six months and we would have our screening and then treat ourselves on overcoming another bout of scan-xiety. We were in our 20’s and thought we had all the time in the world.
In July 2017 we had our regular date, although on this occasion, things were different. Jess was told she needed to come back the next day for a biopsy and by the following day she was called and told she had breast cancer. We were thrown into a world of medical jargon, life altering decisions and nervously waiting for doctors.
During Jess’ treatment I began to think about my own risk and what her diagnosis meant for me, fast approaching the dreaded ‘30’. I contacted my genetic counsellor and she ran the numbers through a risk assessment tool. The results were in- I now had an 89.7% risk of developing breast cancer in my lifetime.
I think everyone here can agree that none of us would board a plane if you had a 89.7% chance of falling out of the sky and yet that is what women like me receiving a BRCA diagnosis feel they are facing.
I made an appointment with my sister’s breast surgeon to discuss my options. She recommended I join the Pink Hope group on Facebook to meet other women in a similar position to me.
On the Pink Hope Facebook Pages I was able to see before and after photos of different types of surgeries, get advice about everything mastectomy related and meet young, courageous women who are in the same position as me. Despite the fact that Jess and I had each other’s back, it was nice to be supported by other people in our shoes as our paths took very different directions.
The support I got from the Pink Hope community made me feel empowered to proactively manage my risk. When discussing potential surgery options with some of my friends, who I might add were no stranger to cosmetic surgeries, they made comments to me such as “why would you destroy your body when you may never even get sick?”, “don’t you think you are being a bit reactive to your sister’s diagnosis?” and “what about breast feeding?”.
Pink Hope fosters a community where there is no judgement, something that is rare among young women in today’s society. Through this community I have met other young women who have provided me with the knowledge, coping skills and support to get me through what has been the hardest time of my life.
I made the decision to have a preventative mastectomy in 2018 at age 28. I had a really beautiful pair of breasts but I was not willing to die for them. It was the best decision I could have made and I don’t look back for a second.
As someone with a genetic mutation you can often feel that you fall between two groups. You are not ill- at least not yet. You have a statistical estimate that is both very theoretical and yet very real. You don’t fit in the cancer community but you alsoneed help.
People used to think that magazine covers were the new beauty standards. Now, Instagram pictures are the new, unrealistic, beauty standard and having no nipplesand scars from side to side certainly doesn’t fit the mold.
When I wake up at 2 in themorning and worry about the way I now look, the Pink Hope Instragram page reminds me that you should never be ashamed of your scars- they simply mean you were stronger than whatever tried to hurt you.
Every day, nestled among the fitness models with 6 packs and the Kardashians, Pink Hope posts tell me that I am brave, powerful and loved.
The BRCA test is a powerful tool, with the potential to alter a person’s genetic destiny. But for women who test positive, trying to decide what to do next is an emotional, financial and physical burden can be overwhelming. In May this year my husband and I undertook a round of IVF with pre-implantation genetic testing to identify the embryos that are positive for the BRCA gene- something I wouldn’t have known about had it not been for posts on the Pink Hope groups. One round cost us $15,000, with Medicare only covering a small amount.
Pink Hope advocate for women and their families at risk of breast and ovarian cancer. Only two weeks ago my sister Jess and Pink Hope’s CEO Krystal featured on the channel 7 and 10 news advocating for free genetic testing for young Australians. This could result in thousands of cancer cases being avoided and $300m slashed in health bills – an extremely worthy cause.
I still have many obstacles to overcome, as I face an increased risk of both ovarian and pancreatic cancer, two types of cancer with very low survival rates. Through Pink Hope I have found real support, wisdom and sisterhood and for that I am grateful. I always try and remind myself and other members that we are the lucky ones. We are the generation of women who get to save our lives. All of us are linked to women who did not get that chance.